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I can’t say there was ever a moment over these last eighteen years where I was absolutely sure my spectrum kiddo would go to college.

We were not that kid.

I can remember last week, before school actually began, when we went to the disability office and I had a mom-moment of panic and I wanted to ask the director if I was delusional to think we were ready for this. I was very concerned that I was overestimating our abilities and setting him up for failure.

What I’ve realized this last week as I’ve watched him successfully and imperfectly navigate his first week of life on a CSU campus is that sometimes the well intended parents we are need to step out of our kids way. We need to TRY to stop fretting and rounding everything off to the nearest disaster and let the children be themselves….imperfectly perfect.

No, it’s not a slam dunk.

Yes, there will be moments of struggle. We are not perfect. He still has communication struggles. He still has organizational struggles. That’s just us. He is a work in progress….as am I. He will make mistakes and that’s okay because that’s part of life for all of us. This week I remembered that parents need to take a deep breath, loosen up those apron strings and let the kiddos blossom into the adults they are meant to be….with flaws and imperfections like we all have…and keep on breathing. The ‘keep on breathing’ part is the hardest part ❤️

I won’t candy coat anything and tell you the road isn’t long, hard and weary. It is.

And I won’t tell you it’s easy to be the bad guy against the school district every year because it isn’t…..but I promise you it’s worth every struggle, every fight and all the hard work pays off on that one day when you get to watch your spectrum kiddo defy the odds against him when he walks onto his college campus alone on that first day of his freshman year in college ❤️

As my boy spent this last week zipping up his graduation gown and figuring out which side the tassel begins the night on, my heart has been upended in an emotional swirl-wind, reliving these last eighteen-ish years from diagnosis to crying-mess to fearful mom to bitch to grizzly-momma to functional advocate. It’s been quite the journey. And what I’m left with as I watched my son walk across that stage are the few things I wish I’d known in those early years.

1. Fight:

If I’d made a list of what I thought I’d need back when he was first diagnosed at 18 months old, fighting is not something I would have included. It was not even something I’d have thought necessary. Why would anyone need to fight to help a child succeed? I was not a fighter. I was sweet and kind. I was a helper. I never raised my voice. I baked cookies for everyone. I was a pleaser. I actually cried heavily in most of those early IEP meetings. And then there is this moment, if your IEP team is not a forward thinking group of people focused solely on the child’s needs (which some most certainly are), when you realize that your child’s well being is not always going to be the school’s priority. If it’s easy for them, they’ll most likely readily help you but if supporting your child goes against the norm or ease of their structure and funding, they will look for the easy way out. If supporting your child threatens their budgets, they will make excuses. The social skills classes that get talked about but never happen. The accommodations that make it into the official IEP but never really take place in the classroom. The testing accommodations in the IEP that don’t get followed. The list could go on and on. Sometimes, the only way to get your child the support that was talked about, promised, or simply needed is for you to stand up and fight for it. Fight like your life depends on it because your child’s life and future will.

2. Be the bitch.

I am not a bitch. I am not. I am sweet. I am kind. I will apologize not only for what I have done but I will apologize for what is not my fault as well…just to make everyone feel better. I am not a bitch. My son was in the fifth grade when I sat in that IEP meeting and used an “F” word for the first time. When I told everyone in that contentious meeting that I would not allow them to “Fxxx” with my son. It was not one of my more eloquent moments but, when a person is thrown against the proverbial wall and your child is not being supported, you’d be surprised what can come trickling loudly out of your mouth. Sadly, this is what many schools count on. The fact that you will NOT fight them. They count on your kindness. They count on you backing down. They count on the fact that you will trust the “experts”. That you will play nice and be kind and allow the IEP team to do what is comfortable for them and not what is always best for your child. BE THE BITCH. As much as it may be uncomfortable for you to step into those shoes and step up loudly, do it anyway. Question them. Ask uncomfortable questions like exactly WHY the services will not be offered when they are so obviously needed. Make them explain to you why they will not serve or support your child. Do not be condescended to. Be firm and expect them to be upset with you and you need to BE OKAY WITH THAT. Do not just take their word for it. Ask for specifics, watch them get uncomfortable and keep asking anyway. It’s okay.

3. Trust yourself.

Don’t let anyone, no matter how many degrees they hold or how many letters they have behind their name, convince you that you are not the expert. YOU are the expert when it comes to your child. Not one person knows your child or what your child needs better than you. No teacher, no principal, no doctor…knows your child as well as you do.

4. Embrace the ugly.

No matter how smart you are, no matter how much you may have been a rockstar in your job, no matter how much you have it “together”, this journey will have some ugly moments…and that’s okay. Things get ugly sometimes. As Marilyn Monroe is reported to have said, “Sometimes good things fall apart so better things can fall together.” I can remember some superbly ugly moments from our journey and they were awful and uncomfortable and tearful but they always came about in the middle of a transformation and the ugly moments were critical in the process. The ugly moments were almost always the privotal moments that created the transformation. Despite the fact that those moments are terribly uncomfortable and often painful, embrace them. They are necessary for us to move our children into better moments. I can remember crying uncontrollably when I received a letter from the Director of Special Services threatening to deny my son services. I remember feeling helpless and alone and like it was me against the world. And when the crying dried up, I got mad and I started calling everyone. I didn’t even know where to begin so I started with a call to the Department of Education in Washington D. C. I didn’t even know who to ask for but they were helpful and kind (and could probably hear the panicky mom-quiver in my voice). They directed me to a before unknown to me office in California called the Office of Procedural Safeguards and that changed everything. I filed a complaint with them against my district. To make a long story short, that phone call was pivotal. After I filed my complaint, they investigated the district and the district was found out of compliance. After that, everything changed. The ugliness was wildly ugly but the school district never treated us with complacency or that condescending tone ever again. And keep in mind, I’d even gone so far as to hold meetings with the principals, teachers, Director of Special Services and our superintendent prior to filing a complaint because I wanted to figure out the problem and fix it. Sadly, no one cared about helping my son until that state complaint was filed.

5. You won’t always be popular.

I remember vividly that moment when a fellow school mom called me to report that another mom (who happened to be the head of the mom’s club on our campus) wanted to know why I was suing our beloved elementary school. A moment that, despite being untrue (I had filed the complaint with the Office of Procedural Safeguards and the school was being investigated but I was not suing anyone) still made me the most unpopular mom on campus. And as much as I did not enjoy that feeling of alienation and isolation, I stood my ground and realized that in order to stand up for what was right and stare down a bully of a district at the time, I would have to stand alone…and that was okay. It wasn’t a comfortable place by any means and as a single mom it absolutely enhanced my isolation, but if I was truly committed to my son and to all the kids who would come after him that deserved to be treated equally and fairly, I would have to be okay with what came next. In my case, that meant standing alone and being very unpopular with the school and with the other parents and yet coming to terms with the fact that being unpopular and being alone would be my new reality if I wanted to truly move my child forward and ensure the support he deserved. In the end, it is what it is. I’d like to say it’s easy but it isn’t. I’d like to tell you everyone will love you but they won’t. We do what we do for our children even when that means we have to embrace the ugly, come to terms with the very capable bitch within us and the fight we did not intend to have. No matter the consequences, we stand up tall for our children because if we don’t, who will?. Who you are and what you do for your child matters like nothing in your life ever has before so do not let anyone make you feel guilty for standing up and demanding what your child deserves.

There’s been this theme I’ve been meaning to write about and I’ve been mulling it over and not quite finding the right path so I’ve waited. And it’s funny what happens when you wait….dilemmas seem to work themselves out in way you could not have imagined :).

A friend of mine asked me recently about whether or not she should push to help her young-ish spectrum kiddo learn buttons and zippers so that he could be independent during school bathroom breaks. As parents, we all know, just how critical this skill is but the kicker is, this kiddo also has some fine motor skill weaknesses that make this more than just a want-to-do kind of thing for this kiddo. What I tried to explain to her is that sometimes, as much as a kiddo may want to be independent, it’s just not going to happen in that moment and adding stress to the equation….won’t help anyone. I advised her to buy velcro and let the boy be independent without stress.

And you all know, I’m all for pushing when pushing will help but, what I told her is…..”Let it go.”

I then began to recount my 17 year old spectrum kiddo’s great triumph over Shakespeare in his English class when he was 16, in high school with no help or pull out minutes, that astounding moment he scored the highest test score on the Macbeth final…out of the high school sophomores. And right after we finished that story, I told her how we don’t tie shoes.

I kid you not. Believe me, we tried and we practiced and we bought the little wooden shoe with laces to practice on and we kept practicing until the stress levels just were NOT worth it anymore and I could see that the processing of the steps along with the finger skills were just not happening for us…and so we bought shoes with velcro and said good-bye to laces. As I have frequently told those who ask us why we can’t……we simply have bigger fish to fry…and we move on without apologies or excuses because it just is not our thing and life can be lived without shoe laces being tied.

We let it go and we move on to other fish.

Sometimes we have to just let go. For the sake of our children, for the sake of life, for the sake of ourselves. Our life has not been impacted because he can not tie his shoes. We rocked velcro until we hit adult sizes and the velcro ran out and then we rocked those slip on Vans. And we kept rocking those slip ons, year after year until yesterday.

Me: How about we go get some more shoes and we buy a second so if you get these dirty you have a good fitting back up?

Him: Okay.

Me: Any idea what kind of shoes you want? The same checkered ones or a different pair?

*And I ask because there are moments when he does a major change up and wants something entirely different and there are other moments when he wants the exact same pair again. It’s nice to be prepped for what we are looking for when we walk in because communicating with strangers isn’t always the easiest thing we do*

Him: I want laces this time.

*and this is where mom was gobsmacked, silent and trying to pick her jaw up off the floor because for the last eight years my boy has been pretty adamant that laces are not going to be a part of his shoe routine nor has he spent one more minute of his life trying to master the shoe lace life*

Me: (trying to recover my shock) Okay. You ready to learn how to tie your shoes?

Him: Yeah.

And we walked into the Vans store and he picked out two pair of shoes…both with laces and not one back up pair of slip-ons because it is now time to fry those smaller fish we let go of years ago.

As parents you need to understand, there are things you will need to let go of (and some of them will surprise you) and it’s okay to let go because only you know what is right for your kiddo. And you need to remember that one day your kiddo may be ready to pick up that skill again, when it is right for them, or they may not. I was perfectly content with never having shoes laces in his shoes but he was not….so now we have laces.

The greatest gift you can give ANY kiddo, is to not judge them according to the socially acceptable benchmarks. Children should each have their own benchmarks. Sometimes you need to push but sometimes you need to gracefully let go of the smaller fish you choose not to fry and it’s indeed a fine line every parent has to determine for their own kiddos….and be respectful of when their kiddos grow up ❤

By now you’d think I’d be able to see these things coming. You would think, after sixteen years, the gobsmacking would not still take me by absolute surprise and leave me speechless. You would think this would be the case but…NOPE.

I will tell you that as of Monday, when your spectrum kiddo begins to speak of Shakespeare and Macbeth, it becomes something similar to a freeze frame moment where the mom’s brain freezes into a slow motion thing and then it takes a while for everything to really sink in. It’s been sinking in since Monday…. ever since my sophomore-in-high-school, regular-ed-classes-with-NO-assistance-spectrum-kiddo and I had this conversation on the way to school on Monday….

Me: So what do you have going on today? Tests? Quizzes? Anything special?

Him: Nothing really that I can think of.

Me: Okay.

Him: Oh wait. Did I tell you what happened in English?

Me: No.

Him: On Friday my teacher told me I got the highest test on the Macbeth final.

Me: Wow? Really?

Him: Yeah, I got the highest grade in A-L-L of her classes.

I. Kid. You. Not.

And this is where mom goes into that gobsmacking, freeze frame, s-l-o-w motion, speechless, jaw hanging open kind of moment. And, yes, after sixteen years you’d think I’d be better at this and it would not take me by absolute surprise and leave me gobsmacked but….M-a-c-b-e-t-h and S-h-a-k-e-s-p-e-a-r-e with thee and thy and thou and inferences and hidden meanings all mixed with autism and speech processing delays and a boy who has always held a general dislike of books. Because we’re still trying to master new English and this is Olde English. And this is the same boy who does not do chapter books with characters and emotions, developing plots and keeping track of events. This is the boy who only started reading library books in fourth grade when he discovered the scientific reference book section with books about spiders and reptiles. Did I mention this is the same kiddo who had a “C”in English just a month or so back? Yeah, same kiddo. So, of course, G-O-B-S-M-A-C-K-E-D, slow motion, freeze frame moment for the mom.

Me: W-O-W buddy. That’s awesome.

Him: Yeah, but I’m not sure I made an A.

Me: Really? I bet you made an A.

Him: Maybe everyone else just did bad?

Me: I don’t think so, buddy. I bet you made an A.

Let that sink in, my friends.

ALWAYS. ASSUME. COMPETENCE .

And, turns out, when I picked him up yesterday he let me know he DID indeed get an A on the Macbeth final. Turns out the rest of the class did not do bad :). He just happened to do VERY well and when I contacted his teacher she tells me it was an extremely challenging final that required a high level of recall and analysis and the spectrum kiddo set the grading curve for ALL of her classes.

Yeah, that’s an unexpected and delightful moment. I’m also even more convinced than ever that different is not less.

Once upon a time, when my boy was eight (he’s sixteen now), I was in the middle of trying to arrange an evaluation for my boy and, being the new girl in California that I was and not knowing who to call, I just started dialing numbers to children’s hospitals. I first made contact with a lot of people who answered phones but did not work with children. But on this one fluke of a call, I made contact with a REAL doctor….I know, I know….a doctor answered his own phone! No secretary, no scheduler, no front man/woman. I simply dialed from my kitchen table, the phone rang in his office in the hospital and he did this crazy thing….he picked up his own phone.

When he answered his hospital phone, I asked for the doctor by name (and for the life of me, I cannot remember his name) and he said it was him. I asked if he did evaluations. He said that the hospital no longer did developmental evals for autism. I was polite and kind and thanked him for his time and I think he must have sensed my sadness and frustration because he kept talking. This doctor began to share with me his thoughts on how, from all he’d researched, he saw autism was a genetic issue. He said we all have markers for autism.

All. Of. Us.

Yep, you and me and everyone else. He said we all have a few minor markers and we just learn how to compensate for the few markers we have. He said what happens with autism is the genetics of the mom and dad, and all their genetic history combined, will amass a multitude of markers in some kiddos. According to him, what happens to some kiddos is they get more markers than they can process. Where one or two of us might have a few quirks, some kiddos get a lot of quirks and it’s hard for them to process so many quirks.

Anyway, I have a hard time explaining it was well as he did but that simple explanation has always made a lot of sense to me. Over the last decade plus when the world at large wanted to point fingers at refrigerator moms or broccoli or vaccines or the flu or induced births or older dads or pain meds during childbirth or the color of the sky, this theory and his words made a whole lot more sense to me.

It’s genetic.

Sweet parents, hear me when I say this…..autism is NOT your fault. You didn’t do anything to cause your child’s autism. The truth is there should never again be any flashy, headline stealing so-called cures or blame on this spectrum. There are no cures for autism because nothing is broken…not you and not your child. No one is wrong or bad or neglectful, my friends. Not you or anyone else.

You are good parents,

you are great people and

you have a beautiful child who can’t wait to conquer this world…one day at a time with you right by their side acting as their guide and advocate when needed.

So, let go of your guilt and the weight of the world that you heap upon your own shoulders, Sparkle moms and dads, and just get on with being the parent and champion your child needs you to be because that is the thing that really matters and will make all the difference on this spectrum journey.

There are just so many moments that you don’t expect. For as many years as we have been on this journey, the moments still leave me gobsmacked.
This is what happened this weekend….

Me: Your brother isn’t feeling well. I’m going to run into the UPS store to mail a package to your sister. Would you two feel like eating a pizza?

Spectrum kiddo: Yeah. That sounds great. I can go order the pizza, Mom.

And that’s the moment.
That moment that becomes a combination of overwhelming pride swirling with a smallish rumble of anxiety that mix awkwardly as the waves of pride and anxiety crash together unexpectedly. It hits me hard but I also know he is watching me and waiting for my answer so I casually catch my breath.

There is no reason to tell him “no” and every reason to say “yes” but it’s something we haven’t done before so, after I catch my breath and readjust my thought process, I answer him. The UPS store is one store away from John’s Incredible Pizza and it’s a quiet day so I say the thing that still scares the mom in me.

I tell him without any visible hesitation, “Yeah, that sounds great.”

I hand him the money and I watch my son walk away…in the opposite direction of me… as though this is our norm. Every one in that part of the world could look at us and not know any difference. They could think this IS our norm but I know. I know this is our first time and I need to steady my mom nerves so I overpower any residual helicopter tendencies and let him walk away…on his own…just like any other sixteen year old boy. And, surprisingly, I keep right on breathing and the world does not even stop spinning.

And, just like any sixteen year old…. he orders the pizza, pays for the pizza and walks out of that pizza joint like a boss with the exact kind of pizza he ordered and change in hand…like this is something we always do. And I casually acknowledge the accomplishment on the outside because I don’t want to embarrass him but, inside, I’m screaming and smiling as bright and big as the whole darn sun.

Thank you, Papa John’s Pizza for an unexpected milestone in our life. The person at the cash register probably never knew the sale was anything out of the ordinary and they treated my spectrum kiddo just like they would anyone else…with kindness and understanding…just like it should be. It was simple and profound and a moment I will not ever forget and perhaps the beginning of a whole new level of his independent life.